I couldn't drive, practice dentistry, or walk my dog.Įven so, the diagnosis was a relief. I hired someone to move in and help care for my children and me. I had to renovate my house so I could live on only the first floor. It's considered progressive - though I don't believe my symptoms are bound to get worse.Īt the time, I was operating at about 5%. Treatments would help me control my symptoms, but this would never go away. My doctor explained that there was no cure. That raised awareness about the condition, but in 2017, when I was diagnosed, there wasn't a lot of information available. In December, the singer Celine Dion announced she had stiff-person syndrome, too. Singer Celine Dion has the same rare disease
That's when I found out I had stiff-person syndrome, a disease that affects about one in 1 million people, and the main symptoms are stiff muscles and violent spasms, and can be triggered by stress. Then, finally, a neurologist took me seriously and ordered a battery of tests for rare diseases. I visited the emergency room nine times, but the doctors brushed me off.įor three years, I was mismanaged, misdiagnosed, and mislabeled. I worried about my kids as they watched their active mother be reduced to laying on the couch with a heating pad.
I started having excruciating neck and back pain. It often indicates a user profile.Īfter that, my health spiraled. Account icon An icon in the shape of a person's head and shoulders.
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